Originally Posted by dkbladez
Have you gotten your children tested? I am debating whether I should have them tested or not. I been through a journey these last few months but I feel better than I have in a long time. I have a trach now and I have a ventilator. I haven't gotten results from my 2nd biopsy yet but I should know something in July.
I wondered where you've been. Sounds like you went through quite an ordeal! I'm still walking (slowly) but the chairs, stairs and getting into other peoples homes is REALLY becoming an issue.
No, I've not had my two teenage daughters tested. They are both athletes and seem to be okay so far. I can't see scaring them by suggesting tests. It really wouldn't accomplish anything. I hope there is a cure or treatment by the time they reach their late thirties (just in case). Mostly I pray that they'll be unaffected altogether.
Also, I am STILL undiagnosed as far as a molecular diagnosis goes. (So we wouldn't know WHAT to test for anyway). I am what they call a clinical diagnosis. That means its quite obvious that I have MD, but who knows what kind
We're going to look at a possible Titan mutation this year.
Nice to hear from you! Take care for now.